What (Not) to Say to a Friend Who Has ALS

Whether I’m at a social gathering or in the middle of a lighthearted chat in the grocery store, there’s no doubt about it — people can say the darndest things! This is particularly true when they’re stymied over what to say to me about my ALS.

Don’t get me wrong. I genuinely appreciate their heartfelt concern and sympathize with the challenge of finding the right thing to say. So, when they fall back to familiar phrases that may work well for other health conditions but not so well for ALS, I let them off the hook.

However, in the spirit of raising ALS awareness and helping friends and family learn what to say and what not to say, I offer the following list and tips:

‘My uncle Albert also had ALS, and he only lasted 4 years’

Although my sympathies go out to your poor uncle Albert, sharing how long he lived is, in my opinion, way too much information.

Plus, it tells me that you don’t understand ALS. From the variety and severity of symptoms to the age of onset, each person’s journey with ALS is unique.

So, while I politely listen and smile, my brain is madly working to erase the image of an invisible expiration date being stamped on my forehead.

Solution: Instead, I suggest you say to your friend who has ALS, “My Uncle Albert also had ALS … and let me know if I can ever be of help.” This shows me you recognize that having a circle of support contributes to my overall well-being.

‘You are such a hero’

Unless I just raised an astronomical amount of money for ALS, I don’t consider myself a hero.

I didn’t choose to have ALS, to fight the battle, summon the courage, or achieve a seemingly impossible quest. I’m simply a person who decided to be optimistic, show up, and participate while living with ALS.

Solution: Instead, call me a role model for others. I’ll accept being a role model because that was my choice.

‘Send me a news article about the latest ALS discovery or “cure” ‘

Not too many years ago, I’d receive newspaper clippings in the mail. Now articles come by email. Since both methods are a form of communication, I’ll include this tip as well.

Please take the time to read what you sent me. Most likely, the news is old, the miracle cure is spam, or it’s for the wrong disease — multiple sclerosis (MS) is not the same as ALS.

Know that within 48 hours of my diagnosis, I scoured the entire internet, joined eight ALS Facebook groups, registered in two chat rooms, and signed up for daily emails from ALS News Today.

I’m up to speed on all things ALS.

Solution: I’d rather receive an email from you with news about you, or an upbeat message. Heck, even funny pet photos are welcome. Just keeping in touch with me would be great.

One final tip

We can’t control the things that people say to us, and someone, somewhere, is bound to make a thoughtless remark. Our choice is to either avoid people altogether or learn to cope and offer them a learning experience. Actually, they may be worried about saying the wrong thing too, but at least they tried.

Solution: Go to reputable resources to learn more about ALS, such as the ALS Association and ALS News Today.

Let’s help our friends and family learn what they can do to help maintain the quality of our lives. Let’s learn to live well while living with ALS.

More helpful suggestions can be found in my column “How to Help Your Friends When They Ask to Help You.”

Dagmar Mun
ALS and Wellness Blog

Nobody's perfect. We make mistakes. We say wrong things. We do wrong things. We fall. We get up. We learn. We grow. We move on. We live.

~ Anonymous ~

A version of this post first appeared as my column on the ALS News Today website.

How to Coach Your Caregiver: Make it a Ham Sandwich

 

Quality caregiving and care-accepting depend on effective communication between both parties. It’s a delicate balancing act, especially when the caregiver is a spouse or family member. With ALS, traditional roles are often reversed, misunderstandings can happen and feelings easily get bruised. Giving care and accepting it is challenging enough without adding emotions into the mix. So, let me share a simple communication technique that’s worked for me, especially now that I live with ALS.

Build a ham sandwich

Have you ever had the experience of receiving a correction from a really good coach or teacher? They probably delivered the correction in a way that made you feel good about your efforts, helped you understand exactly what to do to improve, and felt positive about going back and trying again.

Most likely, your coach or teacher used what I call the “ham sandwich technique.” The name is an analogy for creating a sandwich with your words. The top piece of bread represents a positive statement or compliment, and the middle is the meat — the actual critique or correction. The bottom slice of bread represents finishing with a positive comment or sincere compliment.

 To put it another way, think, compliment + correction + compliment.

Whether we’re the care-giver or on the receiving end of care, we’re all coaching each other. So, the how we say things is just as important as the what we’re saying. Nobody wants to play for a coach who always yells, “You knucklehead! You’re doing it all wrong!” Or, “Why don’t you get it right? I’ve already told you a million times!”

We listen and perform better when we feel validated for our efforts.

For example, recently because of my ALS, I had to give up brewing my own morning coffee and I found myself having to coach my caregiver husband through the steps of my favorite ritual.

I’ll be the first to admit I happen to be super-picky about grinding the beans, the brew strength and the final mixture of milk and sugar. He, on the other hand, doesn’t drink coffee at all and hasn’t ever wanted to make it. You can easily see how this endeavor was an emotional disaster waiting to unfold!

But with patience, coaching, and lots of ham sandwiches on my part, I’m proud to say we emerged unscathed.

And by the end of our joint lesson, he actually turned me around! Using his own expertise in coaching, I was ham-sandwiched into admitting that a new Keurig coffee maker, using those little pre-measured pods, would make life much simpler for both of us. We now own one, use it, and both love it!

Make it a picnic!

Don’t limit your use of the compliment + correction + compliment method to just between patient and caregiver. It’s useful as well for when friends or strangers are trying to help out. Everyone appreciates positive feedback delivered in a kind manner. Be generous with your ham sandwiches — make it a picnic!

Be flexible

Know that sometimes it’s just not possible to take the time for the whole compliment + correction + compliment method. And that’s OK.

For instance, safety concerns may require commands that are short and to the point. But whether it’s a time constraint, a safety matter, or even a case of short tempers, always acknowledge the other person’s efforts. Apologize, if necessary, and make amends.

Taking care of our well-being is a priority for caregivers as well as those living with ALS. The next time you need to give instructions or correct another about your care, try using my ham sandwich technique.

Let’s get back in the game of life and continue our journey of living well while living with ALS!

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Dagmar Munn
ALS and Wellness Blogger

"Communication is the lifeline of any relationship"

Elizabeth Bourgeret

A version of this post first appeared as my column on the ALS News Today website.